The Value of Openness by PatientsLikeMe ®

Volunteering is a big part of the culture at PatientsLikeMe. Inspired by PatientsLikeMe members, who have made our online community a place to find support and answers about health, we do our best to give something back to our local community, too. This year, many of our staff members pitched in and gave their time to organizations all over the greater Boston area. Here’s what we’ve been up to this year…

• 50 PLMers (that’s what we like to call ourselves) volunteered during PatientsLikeMe’s service month in November
• Those individuals volunteered a total of 260 hours
• …and supported 18 different organizations in the greater Boston area

Check out some of the places we volunteered our time this year, and see these PLMers in action…

PatientsLikeMe staff members volunteer at Rosie’s Rosie’s Place

Rosie’s Place is a women’s shelter in Boston that was created to service poor and homeless women. They not only provide shelter, but also support 12,000 women a year with a wide range of services including housing and education.

Tori, Katie, Kim and Rebecca volunteer at Community Servings

Community Servings is a not-for-profit food and nutrition program whose mission is to provide services throughout Massachusetts to individuals and families living with critical and chronic illnesses. They provide home-delivered meals and nutrition services that are medically-tailored to the individuals receiving them, based on their condition. Right now, they deliver to 20 cities and towns across Massachusetts, and are beginning a pilot program in Rhode Island.

Jeremy, George, Jenni and Amber volunteer at Healthcare for the Homeless

Boston Healthcare for the Homeless program supports more than 12,000 homeless men, women and children, and provides access to comprehensive healthcare, from preventive dental care to cancer treatment.

Extending our mission from online to offline

Maria Lowe, Co-chair of the PatientsLikeMe Social and Volunteer Committee, helped organize and coordinate these volunteer efforts in 2017. “I think it’s so important to take time to think about how others around us might not have some of the things we take for granted,” she said. “To me, it just makes sense to give back in whatever ways that I can.” In fostering a culture of volunteerism at PatientsLikeMe, Maria says it fits with our core message. “We’re all about putting patients first and we have our “give something, get something” philosophy, so I think giving back to our local community however we can is just a natural extension of that.”

Here’s to another year of building stronger communities, together.

Interested in becoming a part of the PatientsLikeMe community? Join here.

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“With every part of me that becomes less than what it used to be, a different part of me usually becomes more than what it used to be. In fact, maybe that’s the point, but it doesn’t make it any less difficult.”

Shannon (Sna2164) is a wife, mother, animal lover and writer, living in southern California. She was officially diagnosed with multiple sclerosis at 27 years old, with three children under the age of four. In a recent interview, Shannon told us about her diagnosis, starting a blog and her journey to peace and contentment with MS.

Check out her story about exposing her truth and helping others who feel misunderstood.

Searching for answers

While others can go through years of suffering while waiting for a diagnosis, Shannon’s experience was comparatively quick. It started six months after her youngest daughter was born. She began having terrible pain in her right eye, combined with temporary loss of vision in that same eye anytime she went from darkness to light or vice versa. In her quest for an explanation and solution, she used eye glasses she didn’t need and took antibiotics for sinus infections she didn’t have.

A few months into trying to solve the mystery of her eye pain, she rapidly began experiencing other symptoms including numbness, tingling, and Lhermitte’s sign (a burst of pain that runs down the back, arms and legs when the neck moves). As if slowly going numb from the feet up by inches every day wasn’t enough to alert her primary care doctor that she needed a specialist, one night she got up out of bed in the middle of the night to go to the bathroom and hit the floor. She tried again, and hit the floor again. This temporary paralysis subsided within minutes, but it alarmed her primary care physician enough to insist she see a neurologist right away.

Shannon saw a neurologist for the first time in August 2004 and was officially diagnosed with multiple sclerosis (MS) in October 2004 after an MRI of her brain and cervical spine revealed multiple lesions. She was 27 with three small children and had just been diagnosed with a condition she knew nothing about.

Finding strength through words

Starting her blog, diaryofadisease in 2015 was both a terrifying and freeing decision that Shannon says was the best decision she ever made. She’d been writing about her experience living with disease over the years and wanted to find a way to share it with others.

“I asked myself if creating a blog was really something I wanted to do, would I have regrets about not doing it, simply out of fear, in twenty years? And the answer was yes, so I forced myself to do it despite my long list of reasons I felt afraid and inadequate.”

Many months later, her dream became a reality. While there were many times she wanted to give up, her son stepped in and helped complete her vision for the site.

“He also took the photo on the home page which was anything but candid. I told him I felt like I was standing still in a world that was passing me by, and since he already was quite the photographer, he knew just how to capture my feelings in this photo that speaks volumes.”

When she released her blog, even those close to her knew very little about her struggles living with disease because it was, and still is, very challenging to talk about. Despite her fears, she knew it was important to be honest about her health and experience with MS. She also felt like there wasn’t enough information online that spoke to the heart about living with disease.

“There are volumes of information about MS and disease that speak to the brain about the scientific ‘ins and outs’, but nothing on how darn hard it is to suffer the symptoms. Everyone needs validation for their feelings, everyone needs a ‘Me too!’ moment.”

Although Shannon started her “diary of a disease” as a way to cope, she hopes that it’ll help others who feel equally as lost and misunderstood in their journey of disease.

“One of the greatest rewards is that in surrendering my pride and exposing my truth, my burden is much lighter, and the people who love me in my life have a means to really understand me in a way I could never communicate verbally.”

Adjusting to a new normal

Shannon’s new normal with MS looks and feels very different than what she thought normal meant before. As she moves forward, she’s learning that there are many definitions of normal and that it is okay to have limitations, to live against the norm, to change the way she does things, admit her weaknesses and slow down.

Shannon’s goal is acceptance and contentment. It isn’t always easy. Since living with MS means that each day can look different, the journey to acceptance and contentment needs to happen not once, but again and again. The principle she attempts to follow daily is:

“My value is in who I am and not in what I do, because I have spent too many years drowning in the ‘do better try harder’ mindset, and true peace isn’t found there, and I think that’s what most of us long for.”

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